Although there has been considerable progress in reducing cancer incidence in the United States, the number of cancer survivors continues to increase due to the aging and growth of the population and improvements in survival rates. As a result, it is increasingly important to understand the unique medical and psychosocial needs of survivors and be aware of resources that can assist patients, caregivers, and health care providers in navigating the various phases of cancer survivorship. To highlight the challenges and opportunities to serve these survivors, the American Cancer Society and the National Cancer Institute estimated the prevalence of cancer survivors on January 1, 2012 and January 1, 2022, by cancer site. Data from Surveillance, Epidemiology, and End Results (SEER) registries were used to describe median age and stage at diagnosis and survival; data from the National Cancer Data Base and the SEER-Medicare Database were used to describe patterns of cancer treatment. An estimated 13.7 million Americans with a history of cancer were alive on January 1, 2012, and by January 1, 2022, that number will increase to nearly 18 million. The 3 most prevalent cancers among males are prostate (43%), colorectal (9%), and melanoma of the skin (7%), and those among females are breast (41%), uterine corpus (8%), and colorectal (8%). This article summarizes common cancer treatments, survival rates, and posttreatment concerns and introduces the new National Cancer Survivorship Resource Center, which has engaged more than 100 volunteer survivorship experts nationwide to develop tools for cancer survivors, caregivers, health care professionals, advocates, and policy makers.

https://onlinelibrary.wiley.com/doi/pdf/10.3322/caac.21149

Cancer treatment and survivorship statistics, 2012

This report provides information to increase understanding of the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality rates, health expenditures and costs of care, and effect on caregivers and society in general. It also explores the roles and unique challenges of long‐distance caregivers, as well as interventions that target those challenges. An estimated 5.2 million Americans have AD. Approximately 200,000 people younger than 65 years with AD comprise the younger onset AD population; 5 million comprise the older onset AD population. Throughout the coming decades, the baby boom generation is projected to add about 10 million to the total number of people in the United States with AD. Today, someone in America develops AD every 68 seconds. By 2050, one new case of AD is expected to develop every 33 seconds, or nearly a million new cases per year, and the total estimated prevalence is expected to be 13.8 million. AD is the sixth leading cause of death in the United States and the fifth leading cause of death in Americans age 65 years or older. Between 2000 and 2010, the proportion of deaths resulting from heart disease, stroke, and prostate cancer decreased 16%, 23%, and 8%, respectively, whereas the proportion resulting from AD increased 68%. The number of deaths from AD as determined by official death certificates (83,494 in 2010) likely underrepresents the number of AD‐related deaths in the United States. A projected 450,000 older Americans with AD will die in 2013, and a large proportion will die as a result of complications of AD. In 2012, more than 15 million family members and other unpaid caregivers provided an estimated 17.5 billion hours of care to people with AD and other dementias, a contribution valued at more than $216 billion. Medicare payments for services to beneficiaries age 65 years and older with AD and other dementias are three times as great as payments for beneficiaries without these conditions, and Medicaid payments are 19 times as great. Total payments in 2013 for health care, long‐term care, and hospice services for people age 65 years and older with dementia are expected to be $203 billion (not including the contributions of unpaid caregivers). An estimated 2.3 million caregivers of people with AD and other dementias live at least 1 hour away from the care recipient. These “long‐distance caregivers” face unique challenges, including difficulty in assessing the care recipient's true health condition and needs, high rates of family disagreement regarding caregiving decisions, and high out‐of‐pocket expenses for costs related to caregiving. Out‐of‐pocket costs for long‐distance caregivers are almost twice as high as for local caregivers.

2013 Alzheimer's disease facts and figures

ContextMany studies have documented race and gender differences in health care
received by patients. However, few studies have related differences in the
quality of interpersonal care to patient and physician race and gender.ObjectiveTo describe how the race/ethnicity and gender of patients and physicians
are associated with physicians' participatory decision-making (PDM) styles.Design, Setting, and ParticipantsTelephone survey conducted between November 1996 and June 1998 of 1816
adults aged 18 to 65 years (mean age, 41 years) who had recently attended
1 of 32 primary care practices associated with a large mixed-model managed
care organization in an urban setting. Sixty-six percent of patients surveyed
were female, 43% were white, and 45% were African American. The physician
sample (n=64) was 63% male, with 56% white, and 25% African American.Main Outcome MeasurePatients' ratings of their physicians' PDM style on a 100-point scale.ResultsAfrican American patients rated their visits as significantly less participatory
than whites in models adjusting for patient age, gender, education, marital
status, health status, and length of the patient-physician relationship (mean
[SE] PDM score, 58.0 [1.2] vs 60.6 [3.3]; P=.03).
Ratings of minority and white physicians did not differ with respect to PDM
style (adjusted mean [SE] PDM score for African Americans, 59.2 [1.7] vs whites,
61.7 [3.1]; P=.13). Patients in race-concordant relationships
with their physicians rated their visits as significantly more participatory
than patients in race-discordant relationships (difference [SE], 2.6 [1.1]; P=.02). Patients of female physicians had more participatory
visits (adjusted mean [SE] PDM score for female, 62.4 [1.3] vs male, 59.5
[3.1]; P=.03), but gender concordance between physicians
and patients was not significantly related to PDM score (unadjusted mean [SE]
PDM score, 76.0 [1.0] for concordant vs 74.5 [0.9] for discordant; P=.12). Patient satisfaction was highly associated with PDM score within
all race/ethnicity groups.ConclusionsOur data suggest that African American patients rate their visits with
physicians as less participatory than whites. However, patients seeing physicians
of their own race rate their physicians' decision-making styles as more participatory.
Improving cross-cultural communication between primary care physicians and
patients and providing patients with access to a diverse group of physicians
may lead to more patient involvement in care, higher levels of patient satisfaction,
and better health outcomes.

https://jamanetwork.com/journals/jama/articlepdf/191132/JRP90001.pdf

Race, gender, and partnership in the patient-physician relationship.

https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(03)13861-5.pdf

Household catastrophic health expenditure: a multicountry analysis.

Male circumcision for HIV prevention in young men in Kisumu, Kenya : a randomised controlled trial. Commentary

PURPOSE: To describe the occurrence of fatigue in a large sample of breast cancer survivors relative to general population norms and to identify demographic, medical, and psychosocial characteristics of fatigued survivors. PATIENTS AND METHODS: Breast cancer survivors in two large metropolitan areas completed standardized questionnaires as part of a survey study, including the RAND 36-item Health Survey, Center for Epidemiological Studies–Depression Scale, Breast Cancer Prevention Trial Symptom Checklist, Medical Outcomes Study Sleep Scale, and demographic and treatment-related measures. RESULTS: On average, the level of fatigue reported by the breast cancer survivors surveyed (N = 1,957) was comparable to that of age-matched women in the general population, although the breast cancer survivors were somewhat more fatigued than a more demographically similar reference group. Approximately one third of the breast cancer survivors assessed reported more severe fatigue, which was associated with significantly...

Fatigue in Breast Cancer Survivors: Occurrence, Correlates, and Impact on Quality of Life

Background: Women with breast cancer are the largest group of female survivors of cancer. There is limited information about the long-term quality of life (QOL) in diseasefree breast cancer survivors. Methods: Letters of invitation were mailed to 1336 breast cancer survivors who had participated in an earlier survey and now were between 5 and 10 years after their initial diagnosis. The 914 respondents interested in participating were then sent a survey booklet that assessed a broad range of QOL and survivorship concerns. All P values were two-sided. Results: A total of 817 women completed the follow-up survey (61% response rate), and the 763 disease-free survivors in that group, who had been diagnosed an average of 6.3 years earlier, are the focus of this article. Physical well-being and emotional well-being were excellent; the minimal changes between the baseline and follow-up assessments reflected expected age-related changes. Energy level and social functioning were unchanged. Hot flashes, night sweats, vaginal discharge, and breast sensitivity were less frequent. Symptoms of vaginal dryness and urinary incontinence were increased. Sexual activity with a partner declined statistically significantly between the two assessments (from 65% to 55%, P = .001). Survivors with no past systemic adjuvant therapy had a better QOL than those who had received systemic adjuvant therapy (chemotherapy, tamoxifen, or both together) (physical functioning, P = .003; physical role function, P = .02; bodily pain, P = .01; social functioning, P = .02; and general health, P = .03). In a multivariate analysis, past chemotherapy was a statistically significant predictor of a poorer current QOL (P = .003). Conclusions: Long-term, disease-free breast cancer survivors reported high levels of functioning and QOL many years after primary treatment. However, past systemic adjuvant treatment was associated with poorer functioning on several dimensions of QOL. This information may be useful to patients and physicians who are engaging in discussion of the risks and benefits of systemic adjuvant therapy. [J Natl Cancer Inst 2002;94:39–49]

Quality of Life in Long-Term, Disease-Free Survivors of Breast Cancer: a Follow-up Study

PURPOSETo describe the health-related quality of life (HRQL), partner relationships, sexual functioning, and body image concerns of breast cancer survivors (BCS) in relation to age, menopausal status, and type of cancer treatment.PATIENTS AND METHODSA cross-sectional sample of BCS in two large metropolitan areas was invited to participate in a survey study that included the following standardized measures: the RAND 36-Item Health Survey; the Centers for Epidemiologic Studies-Depression Scale (CES-D); the Dyadic Adjustment Scale (DAS); the Breast Cancer Prevention Trial (BCPT) Symptom Checklist; the Watts Sexual Functioning Questionnaire (WSFQ); and subscales from the Cancer Rehabilitation Evaluation System (CARES).RESULTSEight hundred sixty-four BCS completed the survey. RAND Health Survey scores were as good or better than those of healthy, age-matched women, and the frequency of depression was similar to general population samples. Marital/partner adjustment was similar to normal healthy samples, and se...

Life after breast cancer: understanding women's health-related quality of life and sexual functioning.

Background: Tissue-sparing approaches to primary treatment and reconstructive options provide improved cosmetic outcomes for women with breast cancer. Earlier research has suggested that conservation or restitution of the breast might mitigate the negative effects of breast cancer on women's sexual well-being. Few studies, however, have compared psychosocial outcomes of women who underwent lumpectomy, mastectomy alone, or mastectomy with reconstruction. To address some of these issues, we examined women's adaptation to surgery in two large cohorts of breast cancer survivors. Methods: A total of 1957 breast cancer survivors (1-5 years after diagnosis) from two major metropolitan areas were assessed in two waves with the use of a self-report questionnaire that included a number of standardized measures of health-related quality of life, body image, and physical and sexual functioning. All P values are two-sided. Results: More than one half (57%) of the women underwent lumpectomy, 26% had mastectomy alone, and 17% had mastectomy with reconstruction. As in earlier studies, women in the mastectomy with reconstruction group were younger than those in the lumpectomy or mastectomy-alone groups (mean ages = 50.3, 55.9, and 58.9, respectively; P = .0001); they were also more likely to have a partner and to be college educated, affluent, and white. Women in both mastectomy groups complained of more physical symptoms related to their surgeries than women in the lumpectomy group. However, the groups did not differ in emotional, social, or role function. Of interest, women in the mastectomy with reconstruction group were most likely to report that breast cancer had had a negative impact on their sex lives (45.4% versus 29.8% for lumpectomy and 41.3% for mastectomy alone; P = .0001). Conclusions: The psychosocial impact of type of primary surgery for breast cancer occurs largely in areas of body image and feelings of attractiveness, with women receiving lumpectomy experiencing the most positive outcome. Beyond the first year after diagnosis, a woman's quality of life is more likely influenced by her age or exposure to adjuvant therapy than by her breast surgery.

/pdf/role-of-breast-reconstructive-surgery-in-physical-and-4k6y2vfyla.pdf

Role of Breast Reconstructive Surgery in Physical and Emotional Outcomes Among Breast Cancer Survivors

PURPOSE: To identify variables that might be predictive of sexual health (interest, dysfunction, and satisfaction) in a large sample of breast cancer survivors, with a validation conducted in a second, independent sample. PATIENTS AND METHODS: On the basis of a conceptual framework of sexual health in breast cancer survivors, we performed multivariable regression analyses to estimate sexual interest, dysfunction, and satisfaction in both samples. Additional analyses were performed using stepwise regression and recursive partitioning to explore in each sample the relative contributions of the independent variables toward predicting the outcome measures. RESULTS: The models for sexual interest accounted for at least 33% of the variance, and the significant predictors common to the two samples were having a new partner since the diagnosis of breast cancer, mental health score, and body image score. For sexual dysfunction, the models in the two samples explained at least 33% of the variance, and the common si...

Katherine A. Desmond

Papers

Fatigue in Breast Cancer Survivors: Occurrence, Correlates, and Impact on Quality of Life

Quality of Life in Long-Term, Disease-Free Survivors of Breast Cancer: a Follow-up Study

Life after breast cancer: understanding women's health-related quality of life and sexual functioning.

Role of Breast Reconstructive Surgery in Physical and Emotional Outcomes Among Breast Cancer Survivors

Predictors of Sexual Health in Women After a Breast Cancer Diagnosis